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But You Don’t LOOK Sick?!

When you don’t have visible scars, noticeable physical impairment, or speech impediments (and can still use $20 words like impediment), it’s hard for people to understand that you’re fighting an illness or trying to manage a health condition. Sometimes those of us fighting that illness can even forget. We call those ‘good days’.

Once our hair grows back and looks relatively normal, once the effects of our last seizure wear off and we can stop wearing sunglasses under fluorescent lights, once we acclimate to our new drugs or new doses (and our stammers and memory lapses ease up) we seem like everyone else walking around in the world.

But, as much as we wish we were, we aren’t just like everyone else. We have psychological scars and anxiety every day about having another seizure, tumors growing or coming back, having a brain bleed, or running out of treatment options. This is a kind of anxiety that ‘everyone else’ doesn’t experience. We have invisible effects of our tumors or our treatments – surgery, radiation, chemotherapy, anti-seizure medications. We can’t concentrate for longer than 5 minutes. We struggle to read or write even simple things. Our impaired balance prevents us from riding a bike. We get exhausted when we try to do too much or are surrounded by too much stimulation – those definitions of ‘too much’ dramatically lower than pre-tumor definitions. We can no longer multi-task. We forget names we used to know, shopping lists of 3 items, to move laundry from the washer to the dryer, what we ate for breakfast (did I remember to eat breakfast?) We are less independent that we used to be. We can’t drive. We can’t swim alone. Our friends and family are always on alert for emergency situations or they hover because of their own, understandable worry. Everything can change in a heartbeat.

Most people will make assumptions about us, if they know we have brain tumors, brain cancer, or seizure disorders. They are surprised when we tell them our chemotherapy won’t make our hair fall out and we take it via pills rather than infusions. They assume that we’re going to die, and quickly. They assume brain tumors are a death sentence because that’s how they’re portrayed in the media. They are shocked to find out that there are 120 different types of tumors and many of them are benign. They are shocked that brain tumors are indiscriminate – they can strike children, teens, adults – male and female. That there is no known cause for ANY of those tumors. That our treatment options have changed very little in the last 20 years – largely because brain tumor research is dramatically underfunded.

Even if there are no outward signs – we are fighting a battle every day. We are hoping for better treatment options and a cure. We are hoping that more people will become aware of brain tumors and help us fight. That during Brain Tumor Awareness month (May, by the way), we’ll see sports teams, products, Celebrity PSAs, fundraising campaigns showing their support with the color grey – helping to spread information and increase awareness. For us, grey (though perhaps not as sexy or eye-catching) matters just as much as pink.